Gamble of life: Making babies to save children

Making babies to save children – it’s a controversial topic that even Hollywood debated in the 2009 award-winning blockbuster My Sister’s Keeper.

Going against nature to harvest children via IVF continues to be a moral minefield – but for Australian parents Andrew and Olivia Densley, genetically engineering their sixth child was an easy decision.

For more on 60 Minutes and to watch ‘Gamble of Life’ in full, head to the official website.

At just four, the youngest of the Densley boys, Fletcher, was in excruciating pain after inheriting a genetic blood disease which looked likely to kill him.

A bone marrow transplant was his only hope, and so his parents harvested the perfect match.

On 60 Minutes, reporter Tom Steinfort met the Densley family as they shared their incredibly unique story.

As Steinfort discovered, their decision to genetically manufacture a sixth child was not the hardest or the most controversial they’ve had to make.

The bigger dilemma was whether they ever should have had their fifth child in the first place, knowing they were rolling the dice with a deadly disease he had a 50 percent chance of inheriting.

The genetic disorder known as Wiskott Aldrich Syndrome begins with an extreme case of eczema and, with time, worsens. The body’s immune system shuts down and no longer has the ability to form blood clots.

The only known cure is a bone marrow transplant. Without this, anything from a common cold to a small bump can lead to a painful death.

Olivia and Andrew’s first two children Ayla and Tait were lucky enough to skip the genetic curse, but in 2010 their third child, Cooper, was born with Wiscott and suffered its horrific effects for years.

By a pure miracle, their fourth child, Jackson, was an exact genetic match and could provide the life-saving bone marrow transplant Cooper so desperately needed to survive.

Jackson was only two at the time and bone marrow transplants are a notoriously painful process.

But Olivia and Andrew were confident it was the right thing to do – to save their child at all costs.

“Right from the start we both decided that we trusted modern medicine and that we had full faith in Cooper’s doctors,” Olivia told 60 Minutes.

“Sure, Jackson has to go through something. But it’s not long term and it is only once. It’s going to save his brother’s life.”

The transplant was a success and Cooper has effectively been cured of Wiskott Aldrich Syndrome.

But, as Steinfort revealed, this is where the family’s story takes an extraordinary turn.

Given the traumatic ordeal and knowledge this is a both a genetic and fatal disorder – and that there was a 50 percent chance it would be inherited in future male children – it would be unfathomable for most parents to consider taking the chance to have another baby.

Nevertheless, Olivia and Andrew began talking about baby number five.

When questioned on the logic behind expanding their family, Olivia told 60 Minutes, “I just felt like surely we wouldn’t be that unlucky to get it again. I just had hope”.

In the end, Andrew and Olivia claim the decision was taken out of their hands when they fell pregnant with an unplanned fifth child.

On May 19, 2014, Little Fletcher Densley came into the world. He was diagnosed with Wiscott Aldrich Syndrome just three weeks later.

“It was heartbreaking,” Olivia said.

“I felt for Fletcher. We know what he’s going to through.

“And I guess I did have a little bit of guilt, of we did this to him.”

This time, the odds were well and truly against the Densley family.

No match was found between Fletcher and his siblings so he was put on an international register to find a random bone marrow donor.

As his condition continued to worsen no match could be found.

Olivia and Andrew decided that, despite not wanting any more children, they would genetically engineer one with the purpose to donate bone marrow to Fletcher.

After nearly two years of failed IVF attempts costing more than $100,000 they finally created the perfect embryo.

“I have thought about down the track when the child is older and it does hear about why it was conceived, I do worry about that about what I would say and how the child would feel,” Olivia said.

“But at the moment I feel like it’s not a bad thing. I feel like we can positively say to that child, ‘Yes we did have you for some of your bone marrow but it’s a good thing because we knew you were gonna be okay’.”

On August 2, little baby Lilliahna was born.

She has to be 10kg before the bone marrow transplant can take place next year, so the Densley family wait and hope their family isn’t faced with anymore curveballs.

When asked if they were considering baby number seven, they were adamant, “No thanks. I think we’re done.”